Hi, my name is Zoe, I hope I can sum up my life now, in brief, I grew up having EDS, but because I didn't know it was wrong to be in pain all the time, I didn't know the things happening to me when my joints dislocated was wrong, because no-one told me and I never asked and didn't believe me when I asked.When I became a teenager I started fainting a lot, it became a joke at school and I was treated as such by many people, I had people spitting on me, putting food, mostly meat (as I am vegetarian) and someone once set my hair on fire, that's where I got my PoTS diagnosis.this worsened when I was 15/16 and the faints become seizures, it started one day I was ill with a flu type illness and my mum came home to find me comatose and ever since then I have been undergoing treatment for epilepsy, but this is likely not the case, as my seizures are stopped by wearing neck collars to bed.Ten years worth of seizure medications, a broken knee and countless dislocations later and someone mentioned to me that I may be hypermobile, I went and got the test done and he sent me to get tested for EDS and gave me a fibro and ME diagnosis as a bonus.I joined all these groups to get Information and I shared my pain and feelings and symptoms, then I got an email telling me there was a secret group and I sounded like I had CCI. So I joined and I read off the list like a checklist and then launched my own adventure to get diagnosed.I got the standing MRI tests, I sent my results to some doctors who knew what MRI inside look like and then...a clinic opened in the UK! I emailed them straight away, and got an appointment, with a couple more tests but I got to see the doctor. He told me he believed me, about everything.EVERYTHING.I cried so hard.I often say, this is a life improving/changing surgery, the fact I could die without it is more to do with seizures or falls, but I am not happy living this way for 60+ years it is torture and I wouldn't keep going with no relief. Which is why it is life saving to me, not just life changing.So what this surgery will do, is minimise my pain level, and stop the numbness in my body, I should be able to walk and talk as normal.This should clear up my brain fog, clear my vision and give me back full sense of smell.I will be able to eat normal food again, you may or may not know I mostly eat a liquid diet or very small bites of food and am often sick.The lack of pain means can workout again and build up muscle to stop my joints dislocating all the time.For me, the most important is that it stops fainting when I move my neck and it might (probably will in my experience with a collar) help my seizures.--------I want to add something about the NHS and why I am going privately, I didn't type this, a friend in a similar position did, but I have permission to share it here.Some things to remember - CCI is diagnosed after an international criteria, made by some of the top neurosurgeons worldwide. It’s backed up by science and there’s studies showing that fusions really work. - if you meet the criteria, you have CCI. If more than one specialist have said so, you most definitely do. - the measurements in this criteria are well documented and far from exclusive to CCI. - in Europe (UK), all doctors have the same basic qualifications. The big difference is that if you work privately, you can specialize in a very small field, like CCI, that isn’t prioritized and funded by the government.Again, why would the government spend hundreds of thousands on training and employing a surgeon, who only sees 300 people a year and only do surgery on 150 of them (I feel the numbers were just a representation of a 'small' amount)https://www.paypal.me/ZoeMariaElliott
added as requested, I know the links do not always work.
Basically I've had my surgery, but borrowed the last 5k, so now I need to fill up this to pay that back.